scholarly journals Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

2019 ◽  
pp. medethics-2019-105651 ◽  
Author(s):  
Shona Kalkman ◽  
Johannes van Delden ◽  
Amitava Banerjee ◽  
Benoît Tyl ◽  
Menno Mostert ◽  
...  
Keyword(s):  
Empirical Evidence ◽  
Data Sharing ◽  
Health Research ◽  
Public Attitudes ◽  
Health Data ◽  
Narrative Review ◽  
Great Promise ◽  
The Public ◽  
Social License ◽  
Public Views

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed (MEDLINE), Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests.

scholarly journals Sharing Government Health Data With the Private Sector: Community Attitudes Survey (Preprint)

2020 ◽  
Author(s):  
Annette Braunack-Mayer ◽  
Belinda Fabrianesi ◽  
Jackie Street ◽  
Pauline O'Shaughnessy ◽  
Stacy M Carter ◽  
...  
Keyword(s):  
Private Sector ◽  
Research And Development ◽  
Health Information ◽  
Data Sharing ◽  
Public Attitudes ◽  
Health Data ◽  
Private Companies ◽  
Web Based ◽  
The Public ◽  
Government Health

BACKGROUND The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government’s capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. CONCLUSIONS This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

scholarly journals Public Attitudes Towards Sharing Loyalty Card Data for Academic Health Research: a Qualitative Study

2021 ◽  
Author(s):  
Elizabeth H Dolan ◽  
Kate Shiells ◽  
James Goulding ◽  
Anya Skatova
Keyword(s):  
Data Sharing ◽  
Health Research ◽  
Public Attitudes ◽  
A Priori ◽  
Health Condition ◽  
Research Information ◽  
Academic Health ◽  
The Public ◽  
Willingness To Donate ◽  
Loyalty Card

Abstract Background: A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. Methods: Participants (N=40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.Results: Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants’ decision to donate, although did affect their understanding of how loyalty card data could be used. Conclusions: Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

scholarly journals Sharing Government Health Data With the Private Sector: Community Attitudes Survey

10.2196/24200 ◽  
2021 ◽  
Vol 23 (10) ◽  
pp. e24200
Author(s):  
Annette Braunack-Mayer ◽  
Belinda Fabrianesi ◽  
Jackie Street ◽  
Pauline O'Shaughnessy ◽  
Stacy M Carter ◽  
...  
Keyword(s):  
Private Sector ◽  
Research And Development ◽  
Health Information ◽  
Data Sharing ◽  
Public Attitudes ◽  
Health Data ◽  
Private Companies ◽  
Web Based ◽  
The Public ◽  
Government Health

Background The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. Objective This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. Methods A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. Results The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants’ views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people’s health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government’s capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. Conclusions This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

scholarly journals Chinese views on nuclear weapons: Evidence from an online survey

2021 ◽  
Vol 8 (3) ◽  
pp. 205316802110328
Author(s):  
Naomi Egel ◽  
R. Lincoln Hines
Keyword(s):  
Nuclear Weapons ◽  
Text Analysis ◽  
Online Survey ◽  
Public Attitudes ◽  
Age Groups ◽  
Computer Assisted ◽  
The Public ◽  
Self Defense ◽  
Public Views ◽  
Chinese Public

What are Chinese public attitudes regarding nuclear weapons? Although scholars have studied Chinese elites’ views on nuclear weapons, surprisingly little is known about the views of China’s public. To understand Chinese public views on nuclear weapons, we conduct an online survey ( N = 1066) of Chinese respondents. This is, to our knowledge, the first survey of Chinese public attitudes towards nuclear weapons. We find that although Chinese citizens view the possession of nuclear weapons as important for their country’s security, they strongly oppose the use of nuclear weapons under any circumstances. We also provide respondents an opportunity to describe their views on nuclear weapons in their own words. Using computer-assisted text analysis, we assess patterns in these open-ended responses and compare across age groups. We find that younger respondents emphasize non-material factors such as having a greater voice internationally, whereas older respondents emphasize self-defense. Overall, this analysis sheds light on the public attitudes that may shape China’s evolving approach to nuclear weapons.

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

scholarly journals Involving the Public in Data Linkage Research

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Consensus Statement ◽  
Data Linkage ◽  
Health Data ◽  
Advisory Council ◽  
Research Network ◽  
Plain Language ◽  
The Public ◽  
Data Intensive

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

scholarly journals Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Belinda Fabrianesi ◽  
Rebecca Bosward ◽  
Stacy Carter ◽  
Annette Braunack-Mayer
Keyword(s):  
Data Sharing ◽  
Health Care Providers ◽  
Scoping Review ◽  
Public Attitudes ◽  
Health Data ◽  
Public Confidence ◽  
Care Providers ◽  
Private Industry ◽  
Good Communication ◽  
Government Health

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

scholarly journals Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

2021 ◽  
Author(s):  
Samar Helou ◽  
Victoria Abou-Khalil ◽  
Elie El Helou ◽  
Ken Kiyono
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Health Research ◽  
Online Survey ◽  
Public Health Research ◽  
Health Data ◽  
Perceived Usefulness ◽  
Personal Health ◽  
Sociodemographic Characteristics ◽  
Region Of Residence

Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people’s willingness to share it with researchers. An analysis of 112 responses showed that people’s willingness and perceptions are related to the type of the data, their trust in the data’s anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people’s age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.

scholarly journals “Giving something back”: A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland

2019 ◽  
Vol 3 ◽  
pp. 6 ◽  
Author(s):  
Jessica Stockdale ◽  
Jackie Cassell ◽  
Elizabeth Ford
Keyword(s):  
Common Good ◽  
Public Attitudes ◽  
Good Practice ◽  
Patient Data ◽  
Service Planning ◽  
Biomedical Ethics ◽  
Public Understanding ◽  
Framework Analysis ◽  
The Public ◽  
Public Views

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and privacy debates.Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis.Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data.Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data

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